Progressive Supranuclear Palsy
The question
To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) improve awareness and understanding of Progressive Supranuclear Palsy among healthcare professionals across all regions of England, and (b) ensure earlier and more accurate diagnosis of the condition.
Answered by Ashley Dalton
Under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as progressive supranuclear palsy. This includes helping patients get a final diagnosis faster and increasing awareness of rare diseases among healthcare professionals.
With over 7,000 rare diseases, it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly and are alert to considering them. The 2025 England Rare Diseases Action Plan updates on progress to increase awareness of rare diseases among healthcare professionals, including:
- Launching new resources on the innovative digital educational resource, GeNotes;
- Developing a communication skills resource to aid healthcare professionals in having sensitive conversations to ensure the patient feels supported in their diagnosis of a rare condition; and
- Developing a range of training and educational resources on rare diseases to include rare diseases in UK health professional education and training frameworks.
Another priority of the Framework is to help patients get a final diagnosis faster. Progress has been made over the last year, including research commissioned to better understand what causes delays in diagnosis, the Generation Study to pilot whole genome sequencing of newborns in the NHS being launched, and the work of the NHS Genomic Medicine Service.
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